Family grateful - but still in need of more help for boy's hereditary condition

By RICARDO WELLS

Tribune Staff Reporter

rwells@tribunemedia.net

THE mother of a six-year-old boy diagnosed with a rare hereditary case of angioedema says her family is “truly grateful” for all the help they have received in recent months, but say they still cannot afford medicine needed when the condition flares up.

Angelica Miller said the life-threatening ailment her son, Tarique, suffers from has worsened. Ms Miller said she doesn’t want to lose her son and her only hope is the “kindness of the Bahamian public”.

To combat an attack – which can last up to six days Tarique requires two doses of medicine, costing $9,700.

Last October, the family received written notice from the Princess Margaret Hospital that the facility would be unable to treat Tarique and requested that the family seek further evaluation at the Joe DiMaggio Hospital in Florida.

In mid-November, the family’s worst fears were confirmed. Tarique was diagnosed with 100 per cent hereditary angioedema (HAE), meaning he would need more than regular injections to help battle his condition and that he would need extensive treatment over the course of his life.

In January, Ms Miller appealed for help in meeting the $200,000 costs.

HAE is caused by a low level or improper function of a protein called the C1 inhibitor. With HAE, the blood vessels are affected and an attack can result in rapid swelling of the hands, feet, limbs, face, intestinal tract, larynx (voicebox), or trachea (windpipe).

Attacks of swelling can become more severe in late childhood and adolescence.

Ms Miller said, “I am pushing to do the best I could for him. Treatment is costly, but am trying every avenue to get my son the help he needs.”

During flare-ups, the body experiences major swelling, particularly in the chest cavity, resulting in restricted breathing. Patients suffering with the condition are unable to produce the necessary protein needed to reduce swelling and fluid retention in the body.

“He has had attacks on and off, the hope is that with the treatment we can bring his flare-ups down to zero,” Ms Miller said.

Those who wish to give assistance should contact Ms Miller at 431-6536 or make a donation to Royal Bank account number 730-2227.

Comments

Cobalt says...

I am truly sorry for this child and his parents.

But the truth is..... this is a rare, chronic and life threading condition of which there is no known cure. These parents cannot continue to rely on monatery hand-outs by sympathizers, as treatment for this condition is much too expensive.

The only answer to these types of health and medical problems is to establish a national health insurance system such as Medicare, Medicaid, or an HMO program designed to supplement growing medical cost to those who truly need long term medical attention.

Instead....... our short-sighted, brainless, illiterate, clueless government is busy messing around with the likes of Carnival, BTC, and other pointless ventures, while innocent children suffer.
Ironically...... its these very same victims of this hapless government who continue to vote for them. Imagine that!

Posted 25 March 2015, 7:57 p.m. Suggest removal

Cobalt says...

These worthless, so called leaders really make me sick.

They truly have to idea how to manage, build, or bring our country into the 21 century!! Walking thru the halls of any library are books, liteature and biographies of once mediocre men who became great as a result of their foresight and ability to exercise their vision in building a nation. Men who were once moderate in quality but possessed the brain-power and know-how to build empires that still remain relavant to this very day.

But here in the Bahamas, all we have is a bunch of worthless dummies and money grubbers who call themselves leaders, and Prime Ministers when they are nothing but monkeys in suits!! They are beyond mentally handicapped!!

Some forty odd years after our independence, our country continues to regress with them leading the way! Some forty plus years and our country is still without basic resouses such as public medical insurance, for a population which is considered to be small when compared to the global scale!!
Where is the intellectual intelligence, the bright ideas, the know-how that propels productivity and stimulates growth and development within a civilization??? I dare say we have NONE!!
We're stuck with these brainless apes running our country!!

Posted 25 March 2015, 8:35 p.m. Suggest removal

sansoucireader says...

Maybe they should try contacting the company that makes the medicine. The company might be willing to work with the family by providing the medicine while the family and doctors study how it affects him. This may assist them in developing new medicines and also help Tarique's case or at least make him more comfortable.

Posted 25 March 2015, 10:14 p.m. Suggest removal

Log in to comment